Little more than nothing.

>> Sunday, May 17, 2015

Do you ever feel like no matter what you do, life has other plans? No matter how much diligence, effort, study and action you engage in, it means nothing to the universe? Yea, me too.

Bug's seizures have been within baseline, it's his mood. He is lethargic, melancholy, smiling only every so often and when he does, it doesn't last much longer than 30 minutes. It's as if he is sick, without being sick and he is wearing 100 pounds of weights. He is walking with his knees slightly bent and I find myself wondering if he has something broken. He just lays on the ground and watches me, or watches television or half-plays with a toy, nothing 'little boy' about him, more like old man. I hope it's nothing to worry about but my Mommy sense tells me: something is amiss. Most likely, it's allergies or something along those lines and my Mommy sense is full of it. I am often full of it. It's my natural state.

He goes to the Doctor tomorrow. Hopefully, we can get all the tests I want him to have and we can get some answers or at least a direction. Long night ahead, followed by 'normal' or 'within range' and I will fade into silent misery with concern about what we are missing.


What's a little recess among friends?

>> Monday, May 4, 2015

Maybe it's the moon, maybe it's the weather, but Bug's seizures have picked up a little. Still, not horrible but 4 yesterday and sitting at only 1 today.

And I am somewhat sensitive.

I took him into school this morning and mentioned to his wonderful teacher, that I noticed he was running a little warm. Not a fever, just warm. He used to run warm when he was 3, he was ALWAYS warm to the touch, it was a sign of his folate condition. So this has me worried. Add to the fact that he seized at school last friday as I was getting there. He was postictal and having a really tough time recovering when I joined them on the floor of the office. While he struggled to come all the way out of it, I noticed he was really warm but not sweating. His temp was 99 but it was not a fever. That's too warm.

As I handed him off this morning, his teacher said: so no outside today.

It was a knife to the chest and my eyes stung. I cried most of the way back home.

My boy can not play at recess.

A simple thing. And everything when you are in grade school.

My boy can not play outside.

For those who knew me as child, you will know how difficult that fact is. I have been aware of it for years, we are careful because of it, but today, for some reason, it hit me really hard. Putting it in those terms: recess. He can't play at recess.

That made the seizure in the car on the way to pick up Tay even more hard to swallow. He recovered quickly, and I didn't hurt my arm while trying to keep his head up, but man, that was still tough.

He is smiling and now. Taylor, Dad and the other children are getting ready to go outside and Bug and I will stay inside. We will exclude ourselves from the beginnings of summer in a neighborhood full or children. We will cuddle and maybe smooch, and we will enjoy life the way we can. For now.


What a Seizure looks like (Graphic Content Included)



Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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